World is adapting to autism

Published: Sunday, March 18, 2007 at 6:30 a.m.

Last Modified: Sunday, March 18, 2007 at 12:00 a.m.

It's been five years since the autism earthquake rocked our world.
Our youngest son, Avery, had just celebrated his fourth birthday. He was a beautiful, fun-loving child, but everyone who met him knew he was a little odd.
His language skills were several years behind his peers. He had difficulty relating to others his age. When he did speak, he repeated familiar phrases over and over.
We noticed him humming in a monotone voice, walking in circles and making clicking noises with his tongue. When I asked him about these behaviors, he'd look at me like I was crazy. Moments later, he'd start again.
He was obsessed with certain cartoon characters. He was a picky eater. He hated rough fabrics or clothing tags touching his skin.
Alone, none of these behaviors were terribly unusual. Together, they were cause for concern.
We spent two years testing him and working with therapists before we got the diagnosis we feared. Avery had "Pervasive Developmental Disorder - Not Otherwise Specified" - a clinical diagnosis that translated means he has a mild form of autism.
I have never felt more alone than I did on the day we got this news.
I knew no autistic people nor parents of autistic children. There was no one to call or lean on as we digested this news.
I had no frame of reference for what this would mean to our lives.
At first we turned to books, reading everything we could get our hands on.
Then we started reaching out. My husband and I attended several parent support group meetings, but we were turned off by the anger, resentment and hopelessness several of the participants exuded. We came away feeling more defeated than supported.
When I told friends and family that Avery was autistic, I got blank stares.
"You know, like 'Rain Man,'Ê" I'd explain, but then I'd have to spend several minutes telling them that most autistic people don't have special skills like Dustin Hoffman's character.
Now, five years later, Avery is still the collection of quirks he'll always be. He attends school in a regular classroom with a few extra supports. He plays with friends. He is a carefree and confident 9-year-old boy whose deepest desire is for his dog and cat to love each other as much as he loves them.
In the last several years, awareness and understanding of autistic spectrum disorders has blossomed. New studies indicate that autism affects at least 1 in every 150 children. That number keeps rising, and as more people get to know these special people, the understanding deepens.
In recent years, autism has hit the mainstream.
Tonight at 9 p.m., MTV's "True Life" documentary series will feature three autistic teens and their real life joys and challenges.
Log on to the video sharing Web site YouTube.com, and you'll find more than 3,000 videos made by and about autistic children, teens and adults.
There is an emerging autistic culture that advocates for "NTs" (neurotypical people) to embrace "neurodiverse" people like "auties" (autistics) and "aspies" (people with Asperger's syndrome).
Several online communities, like www.wrongplanet.net, give people with autism and their families ways to connect, communicate and celebrate their differences.
When you consider that autism is - by definition - a social and communication disorder, it seems especially significant that these efforts provide safe and comfortable means of communication and support.
In the five years since our world changed, it's comforting to see that the world's understanding of autism has changed for the better.Robyn Tomlin is the executive editor of the Star-Banner. Her column appears every other Sunday. She can be reached at robyn.tomlin@starbanner.com or 671-6405.

<b>I</b>t's been five years since the autism earthquake rocked our world.<BR>
Our youngest son, Avery, had just celebrated his fourth birthday. He was a beautiful, fun-loving child, but everyone who met him knew he was a little odd.<BR>
His language skills were several years behind his peers. He had difficulty relating to others his age. When he did speak, he repeated familiar phrases over and over.<BR>
We noticed him humming in a monotone voice, walking in circles and making clicking noises with his tongue. When I asked him about these behaviors, he'd look at me like I was crazy. Moments later, he'd start again.<BR>
He was obsessed with certain cartoon characters. He was a picky eater. He hated rough fabrics or clothing tags touching his skin.<BR>
Alone, none of these behaviors were terribly unusual. Together, they were cause for concern.<BR>
We spent two years testing him and working with therapists before we got the diagnosis we feared. Avery had "Pervasive Developmental Disorder - Not Otherwise Specified" - a clinical diagnosis that translated means he has a mild form of autism.<BR>
I have never felt more alone than I did on the day we got this news.<BR>
I knew no autistic people nor parents of autistic children. There was no one to call or lean on as we digested this news.<BR>
I had no frame of reference for what this would mean to our lives.<BR>
At first we turned to books, reading everything we could get our hands on.<BR>
Then we started reaching out. My husband and I attended several parent support group meetings, but we were turned off by the anger, resentment and hopelessness several of the participants exuded. We came away feeling more defeated than supported.<BR>
When I told friends and family that Avery was autistic, I got blank stares.<BR>
"You know, like 'Rain Man,'Ê" I'd explain, but then I'd have to spend several minutes telling them that most autistic people don't have special skills like Dustin Hoffman's character.<BR>
Now, five years later, Avery is still the collection of quirks he'll always be. He attends school in a regular classroom with a few extra supports. He plays with friends. He is a carefree and confident 9-year-old boy whose deepest desire is for his dog and cat to love each other as much as he loves them.<BR>
In the last several years, awareness and understanding of autistic spectrum disorders has blossomed. New studies indicate that autism affects at least 1 in every 150 children. That number keeps rising, and as more people get to know these special people, the understanding deepens.<BR>
In recent years, autism has hit the mainstream.<BR>
Tonight at 9 p.m., MTV's "True Life" documentary series will feature three autistic teens and their real life joys and challenges.<BR>
Log on to the video sharing Web site YouTube.com, and you'll find more than 3,000 videos made by and about autistic children, teens and adults.<BR>
There is an emerging autistic culture that advocates for "NTs" (neurotypical people) to embrace "neurodiverse" people like "auties" (autistics) and "aspies" (people with Asperger's syndrome).<BR>
Several online communities, like www.wrongplanet.net, give people with autism and their families ways to connect, communicate and celebrate their differences.<BR>
When you consider that autism is - by definition - a social and communication disorder, it seems especially significant that these efforts provide safe and comfortable means of communication and support.<BR>
In the five years since our world changed, it's comforting to see that the world's understanding of autism has changed for the better.<BR>
<i>Robyn Tomlin is the executive editor of the Star-Banner. Her column appears every other Sunday. She can be reached at robyn.tomlin@starbanner.com or 671-6405.</i>